posted
So if lyme is a much more advanced bacteria than syphilis, why do many of us with nero-lyme not get the same dosage levels of abx as prescribed for neurosyphilis?
It is my understanding that penicillin G by IV every 4 hours for 10-14 days is the standard treatment for neurosyphilis.
Alternatively, it has been studied (very limited studies) that a minimum of 6g amoxicillin (2g 3x daily) coupled with 500mg probenecid 2x daily is what it takes to get the CSF concentration of amoxil high enough to kill they syph bacteria in the spine/ brain.
I understand that most of us are on more TYPES of abx (combos) and for much longer duration than the above, but I don't often see levels like those above as people's treatments (at least mine haven't been).
Personally, the highest I've gotten is 4.5g of amoxil plus probenecid (plus flagyl, plus lots of others... not monotherapy), and that's of my own doing (going rogue and adding more amoxil than what LLMD prescribed, which is 3g... I'm bad, I know).
What if one of the main problems is that we're not getting our CSF levels high enough to kill this stuff? Even Burrascano's guidelines only recommend minimum of 3g amoxy plus proben. You'd think he'd recommend 6g as a minimum.
Anyway, just curious. I know these guys have been treating thousands of ppl for a long time, so not trying to second guess, but it just doesn't seem to make sense.
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dmc
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posted
moving up ^^
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-------------------- ~Things may happen in my life time to change who I am but I refuse to let them reduce me...~ Posts: 968 | From private | Registered: Jan 2005
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Q: "why not neurosyphilis levels of abx?"
Because neurosyphilis is far easier to treat and does not take as long. I wish my organizational skills were better. Somewhere, here in my computer, is a file detailing the genetic code of both syphilis and lyme. I don't remember how I labeled that or where I put it. And it was just a week or so ago when I saved it.
Lyme is many times more complex in its genetic code than syphilis. The numbers are staggering.
Syphilis and lyme are similar but lyme is, by far, much more intricate. Similar, still they are not the same thing at all.
But, still, the bottom line is that most doctors just don't grasp the serious nature of lyme. It still comes down the CDC and the IDSA saying lyme's not big deal. Big Sigh !
For the ILADS' LLMDs, there is much more to consider - with all the other tick-borne infections. And the shape of a person's liver and kidneys - and ears - determines the course of medicine as much as the infection.
We still have much to learn. Here's one researcher who has really opened my eyes to the complexity of it, regarding the range of forms borrelia entails. A "MUST SEE" video:
====================
Researcher Eva Sapi has some fascinating observations. It's not just the spirochete: Borrelia b. has many forms and, within those, dozens more. --------------
-- This video is a 10 minute clip, part of a 70 minute interview with Dr. Sapi from the University of New Haven.
She is credited with being the first researcher to demonstrate that Lyme spirochetes can actually create their own complex biofilm community to survive indefinitely within their hosts; both human and animal. In May, the full transcript will be made available on the biofilmcommunity.org web site (See Expert Interview section)
BIOCHEMISTRY OF LYME DISEASE: BORRELIA BURGDORFERI SPIROCHETE / CYST -
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- GiGi Posted this From Scott's notes of recent Lyme Conference:
Dr. K believes that comparing Lyme disease to syphilis is misleading.
Syphilis has 23 genes where Lyme has over 250.
It is like comparing "cabbage with a dog". Borrelia is a far more evolved organism.
He posed the question, "What if these bugs could exchange their DNA such that the gene responsible for producing a certain toxin was transferred to harmless bacteria in the oral cavity or in normal gut flora."
It becomes clear that these microbes are highly intelligent.
(GiGi / Scott) ----------------
The original quote is probably at one of these two sites:
posted
Thanks guys! Yes, I definitely understand it is more complex. That's why I would assume that while our duration of treatment needs to be longer, and with multiple different types of drugs (or herbs, etc) to address all forms, I would also assume that these doses should be at least as high.
If my CSF abx levels need to be "X" for a "basic" spirochete like syphilis to be killed once it becomes neurological, I would assume that my CSF levels should be "X" or even "X+1" (etc) for a complex spirochete.
So if they've deemed 3g of amoxil ineffective in the eradication of syphilis because it doesn't get your CSF levels high enough to be bactericidal... why would we think that 3g should do it for Lyme?
As a side note... with the difference in complexity noted, also check out the issues arising from neurosyphilis and either incomplete eradication of is or just lingering damage from it. And that's in the face of the "higher" treatment of IV penicillin. It may be considered a basic spirochete, but apparently many neurosyphilis patients have awful lingering health problems after treatment, similar to us lyme folk. Anyway, that's a whole other discussion.
I do understand that while syph & lyme are both spirochetes, they're completely different organisms, and not all organisms require the same treatment or same levels of treatment. That may very well be why the lyme experts don't recommend higher doses. They are obviously much better trained and experienced in this type of thing than I am.
But just wondered if the reason many ppl aren't getting better is maybe that we're not treating with high enough levels to really kill anything & cross the BBB effectively.
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Sorry, I glazed over the actual question and my brain jumped tracks. Your comparisons in the first post do present a puzzle.
Why not higher doses? Well, even in light of liver and kidney's abiltiies (one would think that neurosyphilis patients would also have such concerns). So, hmmm. HMMM. I hope others will come along and carry this discussion forward. Good questions.
I wonder if it might be that lyme is much more toxic and even treating it causes an even higher toxic load - one the body just can't fully handle. Lyme is one of the most toxic of infections. If we could find a way to negate the toxic effects while treating (such as with certain supplements, etc.) that can help.
BIOCHEMISTRY OF LYME DISEASE: BORRELIA BURGDORFERI SPIROCHETE / CYST
by Prof. Robert W. Bradford and Henry W. Allen
EXCERPTS: . . .
A discovery of great importance relating to a toxin produced by the causative agent of Lyme disease, Borrelia burgdorferi, has been linked to a similar toxin produced by the organism Clostridium botulinum (botulism). . . . -
[ 06-17-2010, 01:53 PM: Message edited by: Keebler ]
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